Trusting Myself to Build Healthy Relationships After Surviving Narcissistic Abuse

Into the Fire

Sometimes, mental illness makes me overly reactive. Other times, as I’m “coming back,” I retain that “edge” needed to take constructive action towards the situations that actually needed it, all the tiny things that simmered low on my priority list because I had more important fires to tend. But even though fire burns, I remain grateful for its role in purification.

“Pre-menstrually we tap into our firepower — our ability to rage and destroy. … The greatest gift of our moon time is in learning to clear space and enter the darkness, in order to be reborn as fertile, creative beings once more. We learn that this letting go, this cocooning in the darkness, is integral to our health. Again and again we must learn to be comfortable in the formlessness of transformation, and rest in the mystery.”

— from Burning Woman, by Lucy H. Pearce

In the past, this edge had sometimes been the only thing connecting me to my power, the only thing to show me that the things I was upset about actually had merit and deserved greater attention. Lucy also paraphrases this very astutely in her other book, “Moon Time”:

“I use the sword of my intolerance to cut deep and true. I keep hold of my vision and manifest it.”

I can think of no better metaphor than this. Allowing the innate wisdom of our frustrations to guide us to their roots, the one place from which we can actually enact change, because we’re finally courageous enough to look at why these seeds have sprouted in the first place. So maybe…

Maybe I should pay more attention when people breeze past painful details I’ve chosen to privately share with them, because that’s a clear sign they lack empathy.

Maybe I shouldn’t keep any digital platform that worsens my mental health, especially just to stay in touch with people who have lots of other ways to stay in contact with me, if they wanted.

Maybe it’s okay if I don’t want to be the only one who tries to keep in touch, 100% of the time.

Maybe I shouldn’t give privileged access to my life to those who only want to be spectators, or to those who only want to get involved in the fun parts. Maybe it’s okay to not be okay with that.

Maybe I should remind everyone that you are not entitled to anyone’s personal information just because you ask kindly, because kindness should not be a manipulation tactic.

Maybe I should remind everyone that my “no” demands as much respect as my “yes,” and that I will not be coerced into feeling a sense of obligation to perfect strangers.

Maybe it’s okay to trust my intuition when things don’t add up and I feel someone isn’t being honest with me.

And maybe I’ll try appreciating myself more for carefully selecting the people with whom I’d like to build long-lasting friendships from here on out, instead of chastising myself for being cautious.

Because I want and need to get back to offering myself to this world, and maybe it’s finally safe for me to believe I CAN manage my new mental and physical limits, and get back to living within them on my own terms, instead of constantly apologizing for not being able to meet everyone else’s.

Responsibility

For the longest time I’ve been trying to find the right way to interact with others, as a survivor of all types of abuse. For example I used to think it was normal to build a relationship with someone emotionally unavailable, because in my formative years it was very dangerous to have my own needs, emotional or otherwise. What better way to emulate not having your needs acknowledged than to pursue someone who would never acknowledge them?

I think that’s another reason me being unable to be there for anyone during my recent downward spiral, affected me so drastically. It’s no secret I live with obsessive compulsive disorder, which constantly tells you that you’re an awful creature who’s going to end up hurting everyone and then tries to convince you secretly like hurting people. (Oh, did you think OCD was just hand washing?) So while all my mental illnesses were jacked up on steroids, OCD really latched onto the idea that by taking time for myself to heal, I was the abuser, now. It makes no rational sense, but such is disorder. Anyway.

Narcissistic types are drawn to people like this, and those struggling with codependency: people-pleasers with an addiction to approval and/or relationships, who feel their only value lies in being who or what someone else wants. I’ve been a recovered codependent for years now after at least ten years of treatment, but I still attract narcissists because they are also drawn to compassionate, empathetic people who enjoy listening to and validating others; you know, people who will give them their “supply” of attention.

Sometimes it’s still hard to trust myself about this, initially. When I start to like a person I immediately think, “What if I only like them because subconsciously they’re exhibiting behaviors that mimic those of the pathological human beings I grew up with, and this is just another quick dead end?” That does happen to me quite a bit, but that’s the chance any of us take in attempting a new relationship. Now, I can spot the red flags relatively quickly and be on my merry way, instead of wasting years in unfulfilling one-sided relationships that I unfortunately tolerated.

When things aren’t working out in your relationships, you have to ask yourself: Which patterns do I keep repeating, and what is my role in it? What are you putting up with that you probably shouldn’t? What do you need yet aren’t actually requiring of anyone? To put it bluntly, what aren’t you requiring of yourself?

It’s uncomfortable being around those who don’t have empathy, but if I see the red flags and still keep them in my life, I’m just as much responsibile as they are, for the pain that comes from being around them. You know the Maya Angelou quote by now: “When people show you who they are, believe them, the first time.”

It’s painful when others don’t want to keep in touch with you unless you’re the one bridging the gap, but if you’re always the one meeting everyone else on their terms, you will eventually discover some friendships existed ONLY because you were meeting them on their terms.

And it’s jarring when people pop back into your life out of no where feigning interest in your well-being, only to disappear into the background again if you happen to be in a rough patch. But I’m the one who has to look that dead in the face and decide either “Yes, I’m okay with this person only being in my life in this superficial way,” or “No, I’m absolutely NOT okay with opening my life up to people who only show interest in being spectators, not friends.”

In other words, my dears, there comes a point in your healing from abuse where you understand you are no longer a passive victim but an active participant in the way your life and relationships are unfolding. When you know better you do better, etc. Victims don’t have any responsibility for their situation; that’s why they are a victim. This means they don’t have any power, either. That’s also why they are a victim. We may have been made victims in the past by predators of all varieties, but now, we are transitioning to survivors, which means we not only get to take responsibility for our healing, but we also have the privilege of taking responsibility for whatever new relationships we build along the way. We’ll make lots of mistakes, but don’t worry: Mistakes are just a natural part of burning through toxic bridges and outdated ways of existing, so that the fresh new ground underneath–fertile, healthy foundation–can finally be revealed.

Strength

I am a creature of many strengths, but I must regularly take inventory that I haven’t surrounded myself with people incapable of showing love. I have to remember that with my gifts of knowing how to make people feel heard, accepted, and appreciated, comes the extra need to protect those gifts from those who just want to take advantage.

I finally trust myself now to not be afraid of my own boundaries or the reactions of others once I set them. I finally see that it’s not my fault I attract predators, that boundaries are okay, and FOR ONCE–even if it’s only this very moment that I type this–I DO NOT FEEL GUILTY. It’s one thing to think these things and live by them just on their virtue, but now I actually FEEL this truth; the gentle power and mutual respect that lies within every human’s right to set healthy emotional boundaries.

The fact that anyone gets confronted with another’s healthy boundary and then runs away, is just a tell-tale sign they don’t like being told “no.” And I’ve realized that if someone is too weak to hear my “no,” they will never be able to handle my “yes.” They will never be able to handle me, at all. I am a force to be reckoned with, and I need to start surrounding myself with other strong, loving people who can handle everything I am. Sure I have difficult patches, but everyone does, and OCD be damned, that doesn’t make me a monster. I need more people in my life who know their worth, who recognize their resilience, who can hold their own, and who see boundaries as a sign of another healthy individual.

You see, narcissists can’t handle being around strong people. That’s why the moment you show them you have a backbone–that you can say “no,” that you aren’t afraid to speak up for your needs–they find another target or lash out, because they know if you’re not looking for others’ approval they don’t have a leg to stand on when it comes to trying to manipulate you. You can’t be controlled by fear, obligation, guilt, or them playing the victim by being offended. There’s certainly a large gradient between “immature” to “narcissist” and then further down the line to “psychopath,” but I am DONE surrounding myself with these types. Any of them. All of them. I’ve had enough to last me twelve incarnations. For all I know it’s already BEEN twelve incarnations of me trying to do exactly what I’m doing right now: Learning day by day, month by month, year by year how to keep energetic vampires out of my life.

Recovery

I learned I do have multiple sclerosis. More specifically, the official diagnosis as of right now is “Clinically Isolated Syndrome,” one of the MS disease courses, which can present with or without optic neuritis; mine presented with, hence those particular symptoms. There’s less than a 15% chance I won’t have another attack, and a 95% chance this IS caused by my untreated neuroborreliosis (Lyme disease). This isn’t my first attack, or even my first documented attack, but since the last one (that they found by accident while I was hospitalized) was attributed to “post-infectious demyelination” or “atypical MS,” and most doctors hold the belief that neuroborreliosis and multiple sclerosis are not related, the “official” diagnosis–clinically isolated syndrome, atypical MS, relapse-remitting MS, neuroborreliosis–will change depending on which doctor I see and their level of understanding my history.

I am now mostly recovered from this most recent attack, and my ophthalmologist confirmed last week there has been NO permanent damage to my optic nerves! Also over the last couple of months, I’ve successfully been able to manage my problem of becoming too easily overstimulated, and I’ve been learning to identify the tiny things that precipitate a shutdown. For example I’m able now to share with people that I need to retreat, before I need to retreat, before I feel forced to disappear without any warning at all.

I’m also significantly better cognitively, after a short course of antibiotics for some random infection back in March. Maybe Lyme or Mycoplasma is playing a role, or it’s the PANS/PANDAS–an autoimmune disease that first presents in childhood which causes my body to attack my own brain when I’m battling any infection–or it could be related to the MS and its own inflammatory process in my nervous system. Or some combination of all of it, who knows. But! What I do know, is that I knew I knew I KNEW this wasn’t just something I was doing to avoid life!!

After finally coming out of my extended mental and physical relapse, after seeing the results of my lumbar puncture, after getting the diagnoses from my neurologist and ophthalmologists, and feeling my profound improvement after antibiotics, I feel… It’s as if I can trust myself again, because it gave me solid proof that my brain really was significantly altered, and it had very little to do with me “choosing” to isolate. I isolated because my brain was trying to process trauma, while being inflamed by lots of extra immune cells, while trying to prevent neurodegeneration and/or blindness, while fighting pathogens literally designed to spiral into my brain tissue, AND I have an autoimmune disease that makes these processes not only cause new mental illness but exacerbate all the preexisting ones. It makes perfect sense why I was unable to function normally or converse at any length.

I spent months rationalizing everything to the end point that I must just be inherently careless and awful. And I had started to believe it. Now I know better.

And if it happens again, instead of being terrified that I’ll lose everyone I love, I will know what steps to take to attempt treating the symptoms, AND feel more confident that I can share with whomever happens to be present that this is literally a symptom of disease, not just maladaptive behavior of my personal choosing. Between that and having unlearned the unproductive coping mechanisms I tried along the way, I have so much more faith that I will be able to deal with whatever happens…WITHOUT believing the guilt.

As I think my writing showed, I was making a lot of progress, and finding significant healing, until the flood happened… I feel back on track now.

Burning Women

Thank you Lucy, for teaching me and millions of other women that the energy in I’ve Had Enough doesn’t automatically have to be feared, especially for those of us who’d never seen it used correctly:

“In the heroine’s journey we realise that the dragon lies not in a far-off land, but curled within. And so we are called inwards. Into the dark cave of our unconscious. …

“This power is mine. I have come to claim it.” Repeating it until you, and the dragon, know it for truth. …

And suddenly the danger is gone. No fight necessary. That dragon had sat on your power for so long it had come to believe it was its own. You had spent so many years listening to the myths of the dragon, hearing him growl within, you got so scared of these stories, that you never thought to come and meet him for yourself. The dragon never was your enemy. The treasure never was his. It’s yours. It always was. All he was doing was waiting for you to claim it, protecting it from those who would steal or misuse it. He knew his job was to protect it until you were able to care for it as fiercely as he. Until you knew yourself as its rightful owner. Until this great wealth would be used wisely, not to do damage to yourself or others. Until you were learned enough in the ways of the world not to squander it or give it away. That was his sacred role, as your greatest ally and protector. …

[W]e are brought up to hand over our power, to let others take care of it, and ourselves, in exchange for us taking care of them, emotionally, physically and spiritually. It is a heavy burden, one usually done unconsciously, and yet expected culturally. A woman who is not willing to engage in this exchange is usually shamed as selfish and immature. But it is an exchange. So as Burning Women we make a new deal: I take back my power, and I learn to take responsibility for myself…and you in return take responsibility for yourself. We may share ourselves and our lives, experience deep love, care, intimacy and connection, but we are each the keeper of our own power. This is the move from co-dependency — the model engendered by our culture — into independence. Intimacy, penetration and sharing through choice, and consent, not obligation.”

Burning Woman

Thank you Marianne Williamson for also shining the Light on this topic with one of my favourite quotes from you:

“Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you.”

A Return to Love: Reflections on the Principles of “A Course in Miracles”

And thank you Roshi Joan Halifax, for eloquently explaining the value of anger–again, especially for those of us who’d never seen that used correctly, either–when you spoke these words:

“I think one has to understand anger in perspective. Anger, for one thing, has within it the seed of wisdom associated with clarity, with discernment. If you cut the value of anger out of your experience, in a way you’re taking some of the structure that allows us to see clearly into things as they are. So the seed of wisdom in anger is discernment. That’s the first thing. The second thing is, our anger toward the experience of disempowerment that is going on… We should be angry. And that sense of moral outrage, in other words the violation of equity. . .gives us the arousal level necessary to mobilize ourselves into action.

“And it’s essential that we act. We can’t just sit there, gaze at our navel, and say it’s all love.

“Love does not mean that we are passive in the face of harm. I think Martin Luther King was clear about the relationship between love and justice. Anything that stands in the way of love is unjust. The absence of justice points to the absence of love. So I don’t separate love and justice in this regard. I see them as intimately intertwined.”

— Be Here Now Network: Mindrolling Ep. 183 – “The Integration of Justice and Love”

Until next time,

Kit


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New month, new progress, new test results

Spider Web, Rockefeller Forest, Humboldt Redwoods State Park © a rainbow at night

I’m pleased to be writing that I’ve made many great strides in getting my life back on track over the last three weeks. I logged back into my Twitter account and began using it on a daily basis; participated in two “spoonie” meet-ups online, #SpoonieChat and #SCTweetFlix; am replying to some messages when my brain has readily-available thoughts on the topic; and have joined a sort-of spoonie/artist/support group/project, even if I only participate sporadically.

Other things haven’t changed so much. I have yet to open any e-mails, or even log-in to my account for that matter. And I’m still staying far away from the M.E. community and the Lyme disease community, i.e. anything to do with that style of advocacy or activism. I momentarily tried to look at how the Lyme community was fairing, but immediately saw memorial posts concerning a young woman’s suicide. I’m not psychologically prepared for that constant exposure again, as I think I’ve made very clear. I stepped into the M.E. community to test the waters, also, but that was equally a mistake.

Mostly, I’ve gained back a lot of personal power that I didn’t even realize I’d given away. I’m on a journey here, and no one has the right to tell me how far along, or at what point on their map, I should be at. I don’t even have the right to talk to myself that way. I’m also under somewhat less stress now that I’m no longer shouldering my family members through their own recoveries. I still have a lot of trouble communicating, particularly in person, but since being on antibiotics for two weeks, that has temporarily improved. In hindsight I wonder if all my temporary improvements in brain function were due to the antibiotics, or just this time.

Now that I’ve moved into the part of grieving where you can look back and see why you handled things the way you did, I realize that I didn’t do much honouring of the choices I made, even the unconscious ones. But I now have the opportunity to re-frame and integrate the experience, so I’m going to take it.

I honour the parts of myself that knew not make my drama everyone else’s responsibility. I honour the parts of myself that recognized I had to heal a little bit more first, or all my interactions would be coloured by distortions too thick to see through. I honour the parts of myself that knew I needed merciful stillness, not ruthless force, and I honour that which gave me permission to listen.

Whereas part of me assumed I’d be swallowed by deep regret over the time lost, friendships lost, and God knows what else once I finally got free, I very surprisingly feel gratitude. 

I’m grateful for even having had the opportunity to take that “time off” to recover. I’m grateful for all the fights I didn’t provoke out of my own pain, had I forced myself to socialize. (Although, in the state I was in, I can’t imagine I’d have been able to find the words for any argument, honestly.) I’m grateful for me being able to realize I was the one who was overburdened with grief, and that it wasn’t anyone else’s job to revolve their life around me to fix that. (Not that I would even do that, but I recently witnessed someone who was blaming an entire community for their own emotional suffering, to the point that they thought the community had to change to make them happy. It did make me think, “Damn, I may have trouble being around certain groups, but at least I realize this is a personal issue, and that no one owes me an apology for living their own life the way they’re entitled to do.”)

I’m still terrified that the day will come when I’ll wake up and everything will have changed without me knowing why, that I won’t be able to tolerate anything again, or another severe trigger or actual lived trauma will set me back months or years. Just as I fear that the next bad headache will be the start of another relapse. Just as someone with depression fears that that one day of sadness will turn into six months of crushing despair. The difference now is.. well, probably something neurological, as the antibiotics have shown me. But I’m no longer allowing that fear to stop me from participating in whatever ways I can choose to, while I’m able.

Thanks to meditation, I have long since found the place in myself that knows It’s not the feelings, nor the thoughts, but the One who is experiencing those things. That place in me is always still, no matter what. To be simplistic, that’s what we call “the lion’s roar” in Buddhism, the ultimate truth within us that causes all other noise to fall away, like beings from all four directions bow away from the sound of the mighty lion’s roar claiming its territory.

From my current perspective, I have two options. I can listen to the survivor’s guilt, the irrational shame, and ruin my life (or at least this stretch of it). Definitely allowed, but not recommended, and clearly unbeneficial. Or, while I’m healing, I can remember that the end point of treatment will be to eventually FEEL that those thoughts are untrue, as well as know that. But the way I see it, there’s zero reason for me to wait until I FEEL those things aren’t true before I start living better. I know the chaos is full of lies, regardless. I know they’re lies now, and I’ll know they’re lies after recovery. Why do I have to wait for my ever-so-fickle feelings to catch up with what I already know, when I can just start living that way, right now? Yes, I’ll still have the thoughts, and they’ll still feel true for the time being, but I know they’re not, and I’d rather have the thoughts while I’m attempting to put my life back together, than have the thoughts while I’m holed up in my house for months.

I can’t give away my power to change the things I can. Because this is how I gave away my strength, by forgetting the immensity of power lying within all the tiny, monotonous choices that actually make or break your life. When I saw myself writing in my last post that I’d started to self-perpetuate my suffering, I knew I had to change that, or it was not going to end well. It also gave me a little hope, because I finally saw a piece of this that was within my control. If there was something I was doing to make this worse, then that also meant there was something I could do to make it better, simply by making a different choice. So I did, and here I am, three weeks later, continuing the momentum that sprung from me publishing that last post after six months of complete silence. That post took me three months. This one took me three weeks. That should say enough.

I don’t doubt I’ll still have “good days” and “bad days.” I’m trying to mitigate the chance of another “disappearance” a bit by taking Sundays offline, in hopes that, like so many other symptoms, if I just rest for a bit regardless of how I feel, I may be able to prevent whatever it is that builds up and make me cognitively shut down. I’m not sure if it’ll work, as I still have no idea what causes that, but I’m trying, damn it.


My latest tests results are equal parts disturbing and fantastic. Good news first?

My last homocysteine level before this one–which, in conjunction with a methylmalonic acid bloodtest, helps determines the rate of your folate metabolism, as well as suggest your risk of stroke and blood clots–was almost 30 (29.4). It’s supposed to be under 10.4 at the maximum, which means it was literally three times as high as it should ever be. Not great! Before my folate deficiency really kicked into gear, it was a lovely 7.2 umol/L. Well as of March, it’s all the way down to 15.8, which is basically only 5-points-above-normal. I’m almost cured of my folate deficiency!

Similarly, when I began treating these methylation problems, I could only tolerate a meager 100 mCg of methylfolate every 3 days. Now, I can tolerate a wonderful *500 mCg* every 3 days, and I’ll probably be able to increase that, soon. (As well as B12, of course, but I need more methylfolate than B12 at this point. I’ve found the hydroxo-cobalamin works much, much, much better than any other type, for me. So heads up: If you have the MTHFR C677TT homozygous polymorphisms, in addition to being homozygous–that is, having both/two copies–of COMT V158M, COMT H62H, *and* MAO-A R297R, like myself, you definitely want to take the hydroxocobalamin form of B12 and just save yourself the money and suffering of trying the other forms. Yes, it works even better than methyl-cobalamin.)

My cholesterol levels are also fantastic and I don’t know if I mentioned here yet, but I’m no longer pre-diabetic after a lot of dietery changes to help treat PCOS. No relapses, there, either!

Now the bad news, even though I don’t know how significant this is yet because I don’t see my neurologist until next week. First, I haven’t found the results of my intracranial pressure reading, or else they aren’t putting it on my online chart, so I don’t know what’s going on, there. I did however get the results of my spinal fluid analysis, and while my glucose is normal (I think?), my protein is normal (I think?), and my white blood cells appear normal (pretty sure?), there were two things that were present that were absolutely not supposed to be: Lots and lots of neutrophils, and blood. I know this could point to meningitis, but I’d like to think if that were the case, my doctor would have called, because that’s serious? So I hope there’s some other explanation. I refuse to Google anything and scare the hell out of myself over what could be going on. I’ll find out soon enough.

Also, while I know the results of my MRI must be in by now, they, too, have not yet posted to my online chart, so I don’t know the results. And honestly, with the wave of fear that overtook me while reading the CSF results, maybe that’s a good thing, in the event it does reveal something troubling.


The spinal tap itself went great, but the recovery was peculiar, and combined with missing my IVIG for two additional weeks, I was feeling beyond terrible. The most bizarre symptom was that I could not stand more than two minutes without severe shaking, all over; the kind of trembling that makes even your teeth chatter together. But I wasn’t cold! Luckily it resolved as soon as I lied back down, but that definitely wasn’t in the “this could happen afterwards” care sheet.

About a week after the lumbar puncture/several days after my eventual IVIG infusion, I had all the symptoms of fighting some type of infection, but without a fever. It was enough to make the room tilt and spin whenever I moved, have hot and cold sweats, cause ringing in my ears, and ultimately a severe headache toward the end, but no fever? Then I remembered, I rarely ever get a fever, no matter what is happening. So after several days of that hell, I said “screw it” and started my antibiotics. I immediately began feeling better, as quickly as the next day. I spoke with my immunologist and was given more antibiotics, and I moved my appointment up by two weeks so we can discuss why my immune system isn’t able to stop all these bizarre infections from happening these last six months, even with the IVIG. I’ll also ask about mold exposure, because that’s a real possibility that I haven’t forgotten about.

During all of that mess I spent most of my time tweeting to pass the hours, and in the process befriended some great people. I tend to feel like an outcast on Twitter the longer I’m on there, so we’ll see how long I last on there this time.

Until next time,

 

Kit

The Path of Least Disruption

“You don’t have time for perfect,” reminds Elizabeth Gilbert in her book, Big Magic.

I’m still alive. And one of the reasons I haven’t been around is because I knew when I returned, I’d inevitably hear about all the people who were not. That might sound a bit crazy, but, even when I’ve taken a month long break, anywhere from 3-6 people in our community will have died. With the winter stretch of the year always being the worst, I can only imagine who we’ve lost, now.

I don’t know how anyone is supposed to be okay with this. No one can possibly be okay when the only people they can truly connect with are those with similar diseases, and then to continually, year after year, watch all those people keep dying. Or otherwise become unable to communicate in a sort of living death, something that happens all too often in my communities. How do you not develop some type of complex around this? How do you deal with the constant stress of knowing that any time you go to make contact, there’s a 50/50 chance you’ll be knocked out by grief for weeks by the death of yet another friend? If anyone knows (and most do) what it’s like to live with a loved one as they’re dying, it’s the same fear you feel that the next time you enter the room, they will have already passed. That’s been my reality for years now, and I feel backlogged with grief. This can’t be healthy for anyone.

I’m 100% out of the loop with everyone. It’s as if I ran off to meditate in the remote forests of India for six months without telling anyone, and just got back. I haven’t been in a position to be anyone’s friend, as cold as that might sound. Or maybe it just sounds honest. There’s a family that needs me here; to coax them away from their fears by being their voice of reason, which is really just their own voice that they haven’t yet given themselves permission to hear; to nudge them towards seeking help, seeking God, and taking care of themselves; to fight for and protect the needs of the children, who might otherwise be overlooked; to show them the possibilities of loving life even when nothing goes the way they expect, or desire; and most importantly, to lead by example that you can face life exactly as it is; it might not feel great, and you will probably feel overwhelmed for large stretches of time, but it’s possible. The pain of facing the hardship of life is far, far, less than the destruction of a lifetime that comes from trying to avoid or ignore it. I’m so glad I’m able to be this person, still, for those in my immediate vicinity. But with the condition I’m in otherwise, it’s both the least and the most I can do. My cup is always full, and any spare “spoon” I pick up I try to use doing something I enjoy so I still want to keep living. So far so good.

"If you can sit quietly after difficult news; if in financial downturns you remain perfectly calm; if you can see your neighbors travel to fantastic places without a twinge of jealousy; if you can happily eat whatever is put on your plate; if you can fall asleep after a day of running around without a drink or a pill; if you can always find contentment just where you are: you are probably a dog." Jack Kornfield, A Lamp in the Darkness: Illuminating the Path Through Difficult Times (2011).

Of course, when I do feel happiness–which happens more often than my serious, direct style of writing here belies–I’m immediately courted by survivor’s guilt. I’ve come to accept those intrusive thoughts for what they are–mental lies–and try not to take them too seriously. I know they’re a sign I need help, which I plan to get, somehow. As I keep saying: I won’t abandon myself. I just wish it didn’t feel like I had to abandon so many others to get through my own life, at the moment. I might be pouring too much thought into that, but that’s just part of who I am.

Lately, most of my attempts at self-compassion immediately detour to shame and guilt. Only after meditation did I even notice this had been happening. One moment I was feeling gratitude that I was able to wake up and listen to music for an hour and meditate, the next I was thinking of children in war zones who can’t do that, and people with illness so severe they can’t listen to music, and my brain’s idea of logic was that somehow me being able to do those things makes me “bad”… Because of course, me feeling guilty over the things I enjoy will help other people feel better, you see. Sigh.

My succinct, “life lessons style of writing” was never something I planned to do, but the extremes of my life birthed it. What I’m going to try to do now, is to take my site back to old school journaling. If you like to read that type of thing, read it. If not, don’t. I’m still non-existent on e-mail and social media for right now. There are “good days” and “bad days,” good stretches and bad stretches.

“Needing to isolate has to do with us, the sufferers. Pushing you out of [life is a] way to have some control over what is going on… We can’t handle the shit going on with us when people are always present, adding little things to the swarm going on in our heads. Sometimes it’s just too much and having people around, especially the ones we really love, it adds to overload. We get feelings of insecurity, worthlessness, and don’t want to put that on others. Being in a relationship with someone with PTSD means understanding a sufferers need to isolate, and all the other shit that comes along with it.”

via user “silver.” on MyPTSD support forum

With a few exceptions, this level of distance from others has been the case for me basically all of 2016 and thus far this year, after a period of extreme acute stress in late 2015; the straw that broke the camel’s back and turned my solitude into survival. When I read that bit above, it’s spot-on about how the presence of people, even people we like, somehow adds “little things to the swarm” of mental overload. Just asking me a question can cause my thought process to short-circuit, but it’s impossible to describe why. I know how I feel inside, and what I think inside, but getting that across is another thing entirely. It reminds me of a certain interview with Whitney Dafoe before he became 100% bedbound, where he said he wished sometimes he could just be around his loved ones without them talking to him, if they could just let him be around them without actually interacting, he’d enjoy that very much. I enjoy that immensely, as well, but it’s nearly impossible to experience unless you’re with another Buddhist or on a silent retreat somewhere.

Last Spring I got to thinking I was just in a rut, so while having a good spurt, decided to force myself to socialize in the event it might help. But while I enjoyed myself at the time, it backfired spectacularly. Even that which I actually want to do, accumulates into a ticking time-bomb of how long I last before I need weeks of isolation to counteract it. This has been worsening for years, and after the flood… I just don’t know.

Louisiana Flood Damage Debris Pile, Before Pick-Up © a rainbow at night, 2016

It’s taken me years to realize that what I’m doing is a response to something else that’s happening internally, that I’m not just choosing to do this because I feel like being alone. I do enjoy being alone, and I will always make the best of things even if I can only tolerate my own company. As I read somewhere and found quite truthful, sometimes the fight to fit in becomes worse than the illness. But enjoying solitude is not the same as wanting to socialize and engage with your community, and care for the friendships you’ve cultivated, and in fact even knowing you need to socialize because isolation begets all sorts of awful things, but then being completely cognitively stunned by the first response you’re required to generate. I don’t know what’s happened, I don’t know why this is so much more difficult than other mental tasks or why it affects me so profoundly, but whatever this is, it is very clear to me now that it isn’t just some preference. And I have to stop beating myself up about it. I can’t be the only person who goes through this. In fact, I know I’m not.

The gist of it is: Sometimes interacting makes me worse, but sometimes I can handle it, and there is unfortunately zero difference in how it feels to me at the time, so absolutely no warning I can give if a disappearance is about to happen. It’s like trying to predict when my OCD or stuttering will suddenly worsen. Or like asking someone with RA or Lupus or MS when their next flare-up is due. It just doesn’t work that way.

Because of this, I’ve noticed it’s started to become self-perpetuated, also. There have been times when I wanted to finally reach out, only to then stop myself because I feared so much being unable to continue the momentum; that I’d just end up disappearing again. It’s my way of trying to minimize the damage of suddenly disappearing around people I thought I could keep contact with. I don’t want to hurt anyone, but this is all so unpredictable, so that feels inevitable. As one person said, “Who the hell wants to be around a touchy individual who tends to disappear off the map for reasons most people cannot fathom?”

© a rainbow at night

When I write this, and really look at it, I find compassion for myself in dealing with multiple, multiple diseases–of brain, of body, of thought–that make isolation my current reality. Being in stillness was, and can be, very therapeutic. I can find acceptance for where I am, and others tell me I’m some sort of inspiration for finding a way to enjoy life despite all of this, but I still end up thinking about my inability to be what others want, or need, or deserve. On top of it all, maybe I’m also grieving yet again for the loss of my former self, this time the person I used to be just a few years ago, who was able to engage with the world. Everyone I met, even strangers, would tell me that they could somehow feel my love for life when they were around me. And now…

More to say about my brain, so switching gears. Sort of.

Opportunistic infections are something I’ve been dealing with constantly since the flood. Skin infections, fungal infections, follicle infections, eye infections, repeated ear infections, repeated sinus infections, gastrointestinal infection from probiotics because I accidentally ate yogurt more than once… Then my seasonal winter relapse, followed immediately by a major health discovery that I’ll have to talk about on a different day.

Right now, I’m being worked up for multiple sclerosis, and/or increased intracranial pressure (aka intracranial hypertension), or both, or who knows what. Two doctors have confirmed my optic nerves are very pale and not getting adequate blood flow (suspected papilledema). My neurologist thinks this is because the pressure around my brain is.. well, pressing on things, and causing a significant amount of my symptoms. Yesterday I got a shit ton of bloodwork to make sure my kidneys can handle upcoming tests, then I’ll be getting another MRI with contrast, and an infrared-assisted lumbar puncture (spinal tap), both next week.

Much of the time I can literally feel a pressure in my eyes. Then with my ever-present headaches, the vision problems, worsening dizziness, tinnitus, and photosensitivity, alongside my significant changes in personality and cognitive decline, intracranial hypertension seems a given at this point. If confirmed, it will then boil down to why is it happening. There are endless suspects. I wonder if the IVIG may have either initiated this, or worsened something already in progress, because a lot of the changes I’ve experienced started immediately after that. Not that I’m complaining, because even if it did contribute to this, without the IVIG I would not have beaten the bartonellosis, or even be here to talk about this. I also wonder if the Lyme disease has any role, because while I haven’t had the symptoms I used to associate with it, these things currently happening are pretty much exactly what happens in late stage neuroborreliosis, which still, no ones knows whether or not is curable. You’d think it’d be as easy as checking for bacteria in my cerebrospinal fluid, but system-wide, borrelia prefer body tissue to hanging around in fluids where they’re more vulnerable. It’s almost impossible to tell what’s caused what, at this stage. And who knows, it may be something entirely new.

"I am scared. I'm scared that I don't know how many more good days I'll have. I'm scared of what this illness means, and I'm scared of what I know it can do to my life and my body. I'm scared that I'm not spending enough time with my family, I'm scared that I'm not telling the people that I love what I have to say and what they need to hear. I'm scared that I'm not living my life to its full potential. I'm scared that at any given moment my health could take a drastic turn in any direction that it wants to, and that it's out of my control. But no matter what happens to me, I know that my fears are because I care, my fears are because I still have good things in my life. I'm scared because things matter, so maybe it's not so bad after all." By @mrswelches

As for multiple sclerosis, I already meet all criteria for it, alongside a significant predisposition to developing it, so an official diagnosis could be imminent… But again I wonder how one would differentiate that from everything I already have going on? We shall see. But until the results are in, my IVIG infusions are on hold, because the possibility that an immune response to the blood product or a reaction to the intravenous fluids could worsen the pressure in my skull is too risky, not to mention getting others’ antibodies infused into me could alter my own test results. And “you have to do another spinal tap” is not something I ever want to hear.

I’m not going to say I’ll keep posting, because I’m not sure that I will, even if I want to. I won’t say I’ll try to get back to replying to comments and emails, because even though I want to, I’m not sure that will happen. I just know that I’m here, I’m posting right now after a huge effort to accomplish this, and despite 1000% evidence to the contrary, I still expect good things to happen in the future. Until next time…

Kit

A Very Special Way of Life

© a rainbow at night

I’m not used to living this kind of life. It’s so different from what I was supposed to have.

I barely see anyone. I barely go anywhere. I have no local friends and I think I’ve permanently lost my ability to drive. Disease puts me in bed an average of 23 hours per day, or at least to somewhere I can lean back and my legs are propped up to ensure proper circulation. When you tell people these things, they immediately pity you and interpret it as a bad kind of life, or a sad kind of life. “Oh you poor thing…” But I feel neither sad nor pitiful. And if you knew how much worse things actually could have been, you’d understand that only 23 hours in bed is a fucking miracle.

What I actually feel is peace, and I’m content and I’m happy and this fact truly boggles my mind.

This isn’t complacency. I know intimately the “lurking dangers” of this life and never have my head in the clouds–it’s not my style. Just last month I tried an herb that had once helped me for seven years; it failed. The month before I temporarily stopped a medicine I was on to see if it really makes a difference; it does. Two weeks ago I upped another med because one of my symptoms has worsened. And I’m only narrowly avoiding having to start a new neuropathy medication. Meanwhile, with much help I’ve planted spider lilies and a peach tree as investments in the future, bought a chaise lounge for my back porch so I can be outside more, have written and advocated a lot (obviously), put new wind-chimes directly outside my bedroom window, made reservations for a four-day beach vacation with my family next month before it gets too hot, because four days means at least one of those days I’ll be able to actually see the beach…

And I also have neurologist, immunologist, pain management, primary care, and endocrinologist appointments, although I struggle immensely with getting to them. As well as four semi-important blood tests to do that will probably never actually get done because I’m sorry, it is just not possible that someone as ill as myself can awaken and get up four hours earlier than usual without any caffeine, any pain medication, or any food, while having autonomic neuropathy, suicide-levels of pain, and pre-diabetes thanks to polycystic ovarian syndrome…

No, I’m not complacent.

There’s no wool over my eyes so that I can smile in the opposite direction. I’ve spent enough of my time in emergency rooms and hospitals and grieving the deaths of others from my same diseases that a bubble of blind optimism offers me no protection. Nor have I given my resignation to life, although I know I’ve exhausted my treatment options. Even if this was as good as it ever got, I’ve done enough living for many lifetimes, I think. And when the theatre season picks up next month I do have plans to go and to see. There’s a choir, another chamber orchestra, another beach, another ballet, all evenly spaced so that I’ll have time to rest then go then rest again to ensure my attendance at the next.

But for the past four months I’ve been what can only be described as a recluse, and I am so perfectly fine with it, that my peaceful surrender actually gave me pause. I had to stop and make sure nothing was wrong with me, that I wasn’t secretly anxious or scared or complacent or depressed or suffering a lack of motivation, because in my naiveté I thought those were the only reasons anyone could be in their own company for as long as I have and not crave “more.” As it turns out, my definition of “more” has changed dramatically, and being peaceful this consistently just isn’t something I’m used to, so I’ll sit with it for a while until I understand it fully, like Buddha under the Bodhi tree.

Most of my life has been spent in some form of chaos. Even growing up, I had no idea what it meant to relax, although ironically I never put it together that such a hellish environment was the very definition of stress, because that fact was so vehemently denied by the chaos-makers in favor of the illusion of happiness. It occurred to me later in life that this may be why I only accept authenticity and facing life head-on: I know what it feels like to be surrounded by fake emotions and others’ delusions instead of reality, and I never, ever want to live that way again. Life is much less frightening when you face it, trust me. There is safety in the truth.

Even though this is the kind of life that most would consider boring–especially my fellow Americans–I am so happy, and my quiet existence fills me with such joy. After living chaotically for such a long time, there’s now a sweet comfort in my predictable routines, an intense pleasure to be found in what most call mundane. The paradox is that I’m faced with allowing myself this happiness.

Confronted with better alternatives to old toxic patterns, there’s a bridge I must cross every time solutions seem too easy, too good to be true. I used to feel guilty for feeling calm amongst awful situations that were tearing other people apart, situations that in fact used to tear me apart, also. You think I just woke up like this one day? Oh, definitely not.

I still remember where I was the first time I noticed everyone around me was crumbling under a crisis, yet I, instead, was overcome with internal peace, finally aware that I could still not only feel calm, but I could actually be the calm, even as I acknowledged the situation’s dark potential. The difficult part was no longer finding that quiet internal space, but allowing myself to be as okay as I sincerely felt, and understanding it didn’t mean I was any less concerned than everyone else. Unfortunately, that’s how everyone else interpreted it even as I openly expressed otherwise, but you can’t please everyone.

I’m learning to be okay with this type of stability.

People do everything they do because they want to be happy, feel safe, have an impact on the world around them, and live in harmony. I used to think there was only one way for me to get there.

Thank goodness I was wrong.

a rainbow at night


See also:

The Killer in the Crowd

♪ “Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.

But that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.

I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.

Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.

A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.

The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.

I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.

I regret nothing.

a rainbow at night

A Relapse Within a Relapse

Avenue of the Giants, Humboldt Redwoods State Park © a rainbow at night

First, I can’t thank anyone enough for the response on my last post; it was quite unexpected. I’m glad to have touched the hearts of so many and to have received such a beautiful outpouring of love and support in the comments and e-mails that followed. It really helped me feel less alone, and you should all stop to think of how amazing you are for reaching out to a practical stranger. Thank you.

Right now the biggest thing on my mind is, a friend of mine who I wrote about several months ago, Brooke, is in the very final stages of myalgic encephalomyelitis. There were recently several weeks when insurance troubles denied her hospice care, during which she deteriorated very quickly. I do know she is getting at least some pain relief, and that is a blessing, and recent complications hint that it might not be too long…which is probably a blessing, too, if you ask me. She worked extremely hard to produce this post and a subsequent one to cover any confusion about her decision to deny “life saving” measures (questionable terminology) such as feeding tubes, which would only work to extend her suffering past her natural end. Her family will be delivering any updates as they occur.

[ETA: As of writing this, she’s managed to produce one more post clarifying that her amazing doctor convinced hospice to accept her for another 60 days. And amazingly, her bravery has led to being a part of an upcoming documentary about the severity of true myalgic encephalomyelitis, one that might chronicle her passing from this world in an effort that will accomplish her original goal of Documenting M.E. and all that it entails, to help spread the truth for us all.]


Also, I’m in the midst of a further relapse. My health has been in a state of decline since June, and additional stressor after additional stressor pushed my body over the edge. Or at least that’s what I assume happened, because I can’t pinpoint one particular thing that did it. I do know the emotionally draining act of writing a goodbye letter to my friend–because life happens–sent me into incapacitating illness for a straight week, during which I was struggling to remain conscious every single day. It was quite scary, but I’ve since become able to stay awake more easily…

It actually took me a while to realize I had relapsed. When I first felt the decline, I expected to recover in a few days, as my health is highly sporadic and changes every day, every hour, every ten minutes some days… And I even expected this recovery might be more extended because of the seemingly continuous stream of triggers… But while I was knocked out last week, it occurred to me that my waiting to improve back to my previous levels of energy had spanned about 8-9 weeks already.

I may write further posts on this and other topics, soon, but right now it’s easier for me to do other things that only require small periods of focus. I’m updating my website behind the scenes, mostly.

Please continue to send your prayers, metta, and positive thoughts to our dear Brooke, her husband, and the rest of her friends and family. Also, to everyone who has recently subscribed here, thank you, and rest assured I will continue to write. (The Life Lessons section has a collection of my favourite posts, in the mean time.) My girlfriend might even be helping write a few sections and/or articles. If you want to contribute either with writing or links that you’ve found particularly helpful, don’t be shy about getting in touch! This site is for my expression, but the information I stand behind should be for the benefit of all.

I shall be focused on finding stability in this relapse.

a rainbow at night

Reaching Out for Support with a Misunderstood Illness

© a rainbow at night

I was incredibly uncomfortable with the idea of posting this… So you know what that means: I must.

I wish I had companionship with other people who identified with my particular variant of living with disease. Diseases for which there are barely any doctors who can or even want to help you. For which patients have to help each other find physicians. Who have had to fight to find even a sliver of support because the public is so disastrously misinformed about the true nature of their illness. Who have had limited or no help from the same group of organizations that would otherwise smother you in understanding and compassion, had you gotten a more acceptable or understood disease.

I wish I knew of the other people whose diseases didn’t have a cure and who’ve also exhausted all of their treatment options; treatments that tiny organizations of doctors have had to figure out, mind you–sometimes at the risk of being jailed–because if we did things the government’s way, we’d already be dead.

Where are the other people who simultaneously are so happy to be alive, valuing life immensely, yet who are also exhausted with day-to-day living? Who understand my uncertainty about the future because they, too, may be redirected from even having one? And the grief… Oh, the grief. There is no turning back this time. I grow more fatigued, more nerves die, my pain meds become stronger, and on rough days–in rough patches–the grieving is literally all I can handle. And it’s incredibly difficult to handle, when I feel I have no one to talk to about this who understands. Where are the support groups for people like me?

It’s almost impossible to find someone who’s tried the fight against late stage Lyme disease, in particular, and come to the same wall that I have: The understanding that the treatments have a greater chance of killing me than the disease itself, and that despite the severity, I stand a better chance at having a life if I let go of the need-to-treat and focus on LIVING.

No, most people aware of having advanced neuroborreliosis–aware that they have ANY progressive illness, really–approach it with a “die trying” attitude, no matter what. That works for some, as I’ve said many times. But I have neither time nor valuable energy to invest in treating a disease that cannot be treated without bringing me down with it. It’s because I’ve watched too many people actually die trying, that I know better. I’ve experienced on my own and witnessed enough in others to know that–unlike the inspirational recoveries in Under Our Skin–some cases are too advanced to treat, and attempts to do so actually cause the disease to advance quicker because the treatments are so harsh on systems already worn down. I am one of those cases, and I am not making that “mistake” again. I barely got through the first time I “woke it up”: We’re talking brain damage, endocarditis, almost needing a heart valve replacement, being bedbound 98% of the day and being plugged up to an oxygen machine. I fought back against all of that, but now, even attempts to gently fix the parts that are worn down, have almost hospitalized me, for the umpteenth time. And I don’t want to be remembered and honored for fighting a disease until it killed me, I want to be remembered and honored for living in spite of one.

It’s not as easy as just finding support groups for other people who are Buddhist, or have myalgic encephalomyelitis, or chronic Lyme, or bartonellosis, or mycoplasmosis. I was once part of a Buddhist support group for those with illness, that tried to enforce a sense of general support instead of conversation about specific diseases. It worked very well when people followed that, but people bring with them all of their life experience and inherited coping mechanisms, for better or worse made amplified by their chronic disease, and it became difficult to enforce that rule without the group splitting into camps. Not very helpful, and it just added stress.

The M.E. communities are usually full of people who don’t even have M.E., but CFS, so they don’t actually live with my symptoms or prognosis. And the only community specifically for M.E. I ever found actually barred users from even mentioning Lyme disease. It’s not my fault I got both, and I need to be able to talk about it. Since a major part of M.E. is accumulation of infections coupled with an inability to fight them off due to reduced natural killer cell function, one would think it extremely important to talk about how to deal with this…? Let’s not even get into the fact that bartonella is more of a threat to my health than Lyme, because most people don’t even know what bartonellosis IS.

AND DON’T EVEN GET ME STARTED on the Lyme disease “support” groups. I am the horror story people use to scare others into getting treatment: Treat now, or the disease will turn into a serious, disabling condition and then it could be too late! Yeah, well…

And try telling those people that you’ve made the heart-wrenching–but I think very brave–decision to stop treatment, and it’s like you’ve told them you murder bunnies in your spare time. How can you do that? Don’t you know what will happen? There’s still hope, don’t “give up,” you’ve just done it all wrong, just try this, and that, and this…

I’m sorry my story scares you. No, we didn’t catch it in time. Yes, it is too late for either natural or pharmaceutical treatment to do anything (besides give me life-threatening herxheimer reactions). But my life still matters, and I still need support. And yet when I’ve reached out with a fragile heart, I’ve gotten judgment and condemnation instead.

For some reason, I had so much more support when I was still in treatment. Well, I’m still fighting for my life, I’m just doing it in a different way. 

It’s similar to when people with cancer realize they need or want to stop treatment and focus on life, and must tell everyone. It’s not always pretty, I get that. I researched a lot of support resources similar to this when I made my decision a year and a half ago, and it was extremely helpful… But I’m tired of researching help other people have gotten who aren’t me. Sometimes I don’t have energy to research support, I just want to talk to a friend who already understands what this is like and get things off my chest.

It’s essential for people with severe and especially misunderstood illness to build a support network, and the circumstances here are critically relevant to how someone experiences being sick in this way. Lately I’ve felt it particularly important to address this before things get more.. well, you know. But how?

So, if you understand this post, or know someone who might relate to it, please don’t be shy about sharing, commenting, or contacting me. To everyone else, thank you for letting me share my story.

a rainbow at night


ETA, 2014 August: This organization might be a start, for some: Online Patient Communities — National Organization for Rare Disorders (NORD).
ETA, 2016 Feb: Something of a miracle happened when my immune system started bottoming out due to my ever-growing infection load: My insurance approved me for IVIG, a $50k per year immunoglobulin replacement therapy for my primary immunodeficiency disease.

Coping with Chronic Illness: Your Life Is Not Over.

[ estimated reading time: 4 mins 39 secs ]
Update: This post has been featured on The Mighty: Thank you guys!


I received a message asking for advice from a person who was new to chronic illness, having just found out they had late stage Lyme disease. In construing a reply, I came up with a bunch of things I wished someone had told me. For a good book to accompany you on this road, I once again recommend How To Be Sick.

The first thing I believe most people want to know when they get sick, is that their life isn’t over. You’re scared, and you think your life cannot possibly continue unless it continues on the path you were already on before the illness arrived. I offer you my compassion.

Things are going to change, but I assure you, your life isn’t over. I ask you to consider that it never even paused at all. Your plans might have changed, but life is still happening, which I’m sure is evident as you watch others continue their own plans while you are forced to reconsider yours. Reconstruct, don’t abandon. The ultimate goal of everything we do in life is happiness for ourselves and others, so that we can enjoy ourselves and our time with loved ones, and if you’re still here, your ability to do this has changed but isn’t gone.

In the documentary film Wake Up, the wonderful mystic Llewellyn Vaughan-Lee said to the struggling man who sought his help,

“I just see the divine within you struggling to make itself known to you, and taking you on a journey IT wants to go on…which may be not the journey YOU wanted to go on, your ego-self had in mind, but is the divine journey in you beginning to manifest.”

This really, really spoke to me on a core level, even though the film is not at all about illness. I don’t necessarily wholeheartedly believe that disease is predestined for a learning opportunity–illness and death are natural processes and not punishments–but I do believe the Universe can guide us through any situation so that it works out for our benefit. I think my spirit wants to get the most out of this hand it’s been dealt, and you might consider that yours does, as well. “What has awoken in you is not a passing phase.”

It’s okay to grieve the direction your life is no longer going. Just know there is more out there, and grieving is a part of joy. I repeat: Grieving is a part of joy. Don’t try to force yourself or your loved ones through the stages of grief faster than any of you can handle, and remember the process doesn’t follow a straight line.

You are going to be okay.

At first, you may be entirely focused on cure cure cure. You may seek validation that your symptoms are real and try to prove it to others through research, because the people in your life may not believe you, especially if your illness is invisible. If you eventually find a cure to be unavailable, you may spend long periods of time–weeks, months, or longer–trying to find a treatment to slow down your disease; your loved ones might go through this, as well. If that doesn’t work out, still, your life is not over.

Buy yourself nice things. Don’t let anyone tell you that you don’t deserve nice things just because you’re sick or have to go on disability; this is the only life you have. Don’t wait to begin your life again “when [this or that] happens” because your life is already happening right now. Remember that the future is made from nothing more than present moments like these, and

“If the present moment has peace and joy and happiness, then the future will have it also.” (Thich Nhat Hanh)

Don’t let your surroundings be drab; make sure they make you feel good, mentally and emotionally. Get comfortable clothes. You probably spend more time in bed than anyone you know, so that needs to be comfortable, too. Invest in a pill organizer that doesn’t psychologically drain you. Make pain management a priority because uncontrolled pain is its own disease.

Learn to gracefully allow people to leave your life, but don’t close your heart when they go: You’ll need that open space for better people to walk into.

Be compassionate with people who don’t believe you. Remind yourself that if they truly knew how much you were really suffering, they would never treat you that way.

It’s okay to not treat your disease, because many advanced cases are incurable. It’s okay to treat your disease by any means necessary, also. If you choose one at one point, it’s okay to change your mind. It’s okay to treat some aspects of your illness and not others. You may not have any control over the disease, but don’t let anyone–not even yourself–convince you that you’re not in control of which treatments happen to your body.

There are different groups in what many call the “spoonie” community, and you’re going to find where you belong. You’ll also probably change roles many times. There are the advocates; the emotional caregivers; the writers and bloggers; the medical advisers, some of whom are actual physicians; the philosophers…

For the people who continue to advocate and fight for advancements in how to help us, including medically, thank you, for you play a part in us being heard. For those who spend their energy enhancing their mental and/or spiritual growth, thank you, for you teach us how to live day-to-day. For those who help us navigate the scientific waters and avoid snake oil salesman, thank you, for you help us use our time and money wisely in a world where physicians may not even exist to help, yet. We are all in this together.

a rainbow at night


Relevant posts from this article:

ME vs. CFS – They’re Not The Same! (via Documenting M.E.)

Brooke hosts this very new blog, intimately sharing her experience as a person with myalgic encephalomyelitis (M.E.) who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months.* That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. Regarding those interests, I feel like I just wrote an explanation about myself! I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries to follow will continue to be enlightening and authentic. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog here, she explains the huge detriment of calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome,” the harm it has caused patients, and how that ever came to happen.

a rainbow at night

“ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as ‘MECFS,’ ‘CFS/ME,’ etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

“Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means ‘muscle pain and inflammation of the brain and spinal cord.’ It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “Read more

via Documenting M.E.

ETA, Feb 2016: This didn’t happen and Brooke is still with us–not necessarily “fortunately,” if you know what an excruciating disease this is–because the final stages of M.E. do take years, which both her and her doctor were aware of at the time. However, she at least was able to enjoy six months of supremely attentive hospice care, which is more than 99% of people with M.E. ever receive, even though countless need it. Her doctor remains an integral part of her care to this day, including home visits, as she obviously cannot as much as leave her bed, much less her house, to go see one.

How Wrong I Was: My One-Year Anniversary Without Treatment

Working on my latest piece; if this doesn’t say “artist’s desk” I’m not sure what does…

I had an experience while having coffee with the squirrels the other day. Well, sitting on the back porch, but same difference.

I was watching all of the animals, listening to the birds, and feeling the gentle breeze. A chickadee–my favourite–was chirping in the midst. Any other day this would’ve been a normal backyard, but at that moment, it was a sanctuary.

There was so much out there: I counted at least ten species of animal within twenty minutes. And as everything just went along with its life, I was suddenly very overwhelmed with the knowledge that life always goes on. It’s humbling and frightening and comforting all at once.

When I opened the door to step outside, everything had paused to look at me. I sat down quietly and started sipping my coffee. Everything went back to its business of finding dinner and fluttering about. Their acceptance reminded me that I was also part of it all—I belonged there.

I glanced over at my house and the walls that separated my quarters from their quarters. Theirs, a tree; mine, a room and bed made from the tree. There were walls to “separate” me from the outside air and ground, protect me from danger and the harsher elements just like any other creature, but all that really separated me from those squirrels and birds and butterflies were four inches of material that the earth provided me in the first place. The stars are always above us even if all we see is a ceiling. We are part of everything. And the earth made room for me to exist, right here.

A few nights earlier, I did that thing where you open your closet to get something and end up distracted by everything else you find. I snatched the sweaters and shoes I bought earlier in the year, for Autumn. Put on a hat. All layered on top of the dress I wore that day. Looking into my full-length mirror, witnessing how perfectly it all went together, I had another “moment.”

I was overcome by how blessed I felt to be experiencing all of this; all of this. Feeling okay with life, even if it is scary; sharing my days with the love of my life; being together during our favourite season; being close to my remaining family; miraculously having funds to take care of everything I need AND want; and being able to wear clothes that represented me, that I picked out instead of clothes discarded from others’ closets.

It happened in a flash of thought, but looking at my reflection, it was as if the clothes were symbolic of all the pieces of my life I’d changed and chosen over this year, hoping they’d eventually, somehow come together in the future; and the perfect way the scattered items “fit,” a reminder of how my life has worked out. All my preparation–in wardrobe choices and life choices–had proved to be more perfect than I could have ever imagined. I had a distinct sense of “I made it.”

My legs do give out more and more lately, but considering how quickly things progressed the previous times treatment failed, I honestly didn’t know if I’d even be walking at all, much less this well, after a year. I didn’t think any of this would have been possible… How wrong I was.

How wrong I was.


Today marks the first anniversary of my relapse in 2012, and the day I stopped treatment. Things aren’t going how I thought they would.

I did not experience remission from M.E. after ten years of living with it, like many do. I did not cure the bartonellosis. My pain continues to expand instead of resolve. I still have mycoplasmosis and I’m not “beating Lyme disease” and I won’t be going into any other treatment programs with the motive of being 100% cured, of any disease.

But I look at who I am now and who I am still becoming, and the people in my life, and the way I experience life, and I wonder if things could possible be any better for someone in this situation. I really don’t think they could.

a rainbow at night

A Dose of Reality: Flare-ups, Symptoms, and Emergency Rooms

First off, a huge thank you to those who have expressed their support and gratitude of my recent writing… I was not expecting it. I have read your words and I want to reply as soon as I can. Right now I feel an update of sorts is in order. Forgive me while I use my spoons for expression, but know that I am actively awaiting the right words to respond to the support you have offered in my direction. :) You help me feel less alone, and on weekends like this one, I really need that…

At the beginning of May I wanted a mini-celebration of the fact that I’ve been off treatment six months and I am still walking okay. So what better a way to affirm my functioning feet than with new shoes!

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30
K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

This event was right before my monthly Lyme disease flare, which still happens around the beginning of the month. I forgot about it this time, so it wasn’t until day three of being in bed that I realized why all these symptoms were suddenly happening.

I effectively went from walking “normally” in new shoes, eating at my favourite foodie joint, to being in bed four days, excessively sleeping through over half of it, and having seizure-like activity again.

Yesterday, I felt as if every inch of me was buzzing, vibrating from the inside-out. I also tried to wash my face with sunscreen; use toilet paper as moisturizer; pour my milk into a sauce bowl instead of a glass; made accidental purchases online; and found myself standing in places I didn’t have any memory of walking.

Yes, I remember all of these symptoms, unfortunately.

But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again, i.e. every 5-7 days…an ominous sign from my bartonella era, but a fact nonetheless. Please, no.

 

My ego said, I would rather all this NOT occur immediately after I finish celebrating how relatively well I’m functioning after six months with no antibiotics! Why did you have to remind me, right now? Maybe I wanted to forget for a little while, just how much my body is going through, just how sick it is…

Another part of me is saddened at the reminder.

And another part of me is actually thankful for the reminder, because it won’t let me float away into denial, while at the same time hoping that I won’t sink into despair…at least not for too long.

See, I go through the same emotions as everyone else. I don’t ever want to seem like I don’t.


I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of my life back, these months that I would have otherwise spent in misery with no real benefit except more worsening. Instead, I have more good days right now, I’m determined to use them fully, and I can be mostly comfortable.

Symptom-wise, this has developed:

  • I consistently see the squiggles, black dots, and smoke-fog illusions in my vision.
  • My hands go numb more often, and various irritated nerves cause intermittent curling of my fingers.
  • There is more numbness in my feet, and more of the old “fire foot” sensation.
  • I have more heart palpitations and trouble staying hydrated.
  • My left leg buckles more frequently.
  • I get more spasms in my back.
  • I get choked more easily.

I recently returned from two ER visits with a random virus…and just like after my last viral attack in December/January, my vasculitis is temporarily on hiatus. So for now I’ve been able to stop the daily ibuprofen that helps keep it in check, but which has also resulted in more trigeminal neuralgia episodes and eye pain.


The shot in my neck they gave me to attempt treating the occipital neuralgia did not go as intended, giving me very odd side effects like falling backwards and an inability to recognize myself in the mirror (?!), I suspect because of the brain lesion(s?). Even just sitting down in my wheelchair, I was so spaced out and off balance that everyone in the office thought they’d given me a sedative–nope! On the plus side, it did seem to interrupt the constant barrage of pain signals coming from the area, so it’s not as constant as it once was. Being on only half the pain medication that I was on before, unmasked many of the neuropathy symptoms that up until then I didn’t know were developing; another thing I wasn’t expecting.


My favourite bit of news is that, I found out if I cover myself in sunscreen before being exposed to sunlight, the vasculitis doesn’t flare up. :) Annnnnnd as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!

a rainbow at night

 

The Choice of Someone With Progressive Disease to Stop Treatment, Part 2 of 2: The Call to Start Living

[ estimated reading time: 5 mins 9 secs ]
Since making my decision, I’ve continued to be pulled in this direction, even when it scares me to think of where it might ultimately lead. So much has showed up in my life to gently guide my realization into, “It’s okay,” and I’m entering a place where I truly believe that. Otherwise, there’s no way I could have any peace at all with what I’m doing.

My family supports me, as do my closest friends. Others are unable to talk about it, which I understand for now. The latest recurrent theme popping up in my life (we’ll call them, Intuitive Affirmations from the Universe) is how much better a lot of people do after their decision to live life instead of treat disease. My most recent encounter was with a woman buying something from me. Out of no where she mentioned her father and uncle who both had cancer, and how her father only made it a year after choosing to attempt treatment, while her uncle made it two and a half after he chose to not.

And of COURSE that’s not always how it works, and people are allowed to choose whatever they think will bring them the best life and most happiness. And yet this is the story the universe brought to me, and it’s been doing that a lot, lately. I’ve also been confronted repeatedly with people in our spoonie community who have passed on, not from their disease, but from their attempts to cure it. Every time, I feel the calling in my soul that this is not how I want to go. I’ve said repeatedly that I do not want to be one of those “die trying” people. That still holds true.

All this helps reaffirm to me that I really am going to face the best outcome by doing things this way. That this way, I will have some enjoyment in life and get the most out of what life has to offer.


I mentioned before that my darkest hour was when I felt like I had to make the decision the Universe approved of, lest I be abandoned by all things good (brainwashed much?), but perhaps that wasn’t entirely accurate. I did think about suicide a lot.

It was worrisome because I’d only ever thought of it when I first got myalgic encephalomyelitis. But I don’t want to harm myself in any way! I love myself and I love my body even if it struggles to be a fully functioning body. After much introspection, it came down to me actually just wanting to be relinquished from the decision of what to do, so I wouldn’t have to feel the agony of “what if I screw up.” Again, in hindsight, I can see why I thought that. If, in that state of mind, my options were to make a decision that would leave me miserable (treating disease again), or choose what I felt to be right but which I was also convinced would leave me abandoned (not treating) … It’s in these moments I have compassion for myself having had to sort through all that.

And I did make it through.


Toward the end of it, I sat and wondered if I would regret my choice to not go into “treatment mode,” having knowledge these genetic polymorphisms exist, and having knowledge of what untreated systemic infections can and will do. Would I blame myself in the future, for not taking action right now to “fix” it? There’s only a tiny possibility it could make things better, temporarily, but it’s just another way to prolong the inevitable.

The loss of life that I would experience trying to keep up with everything involved in “fixing” this, is not worth any benefit I might gain in health, later on.

I do not want that for myself anymore.

My body has a lot of disease, and I cannot devote my precious resources into planning doctor visits; going to doctor visits; finding more doctors based on test results; researching what supplements to take and how to take them; or having to be a part-time researcher in general just to validate what my doctors tell me, because I’m sorry, they just haven’t proven themselves to be competent at all and their ignorance was almost the death of me on more than one occasion, if I hadn’t trusted my gut…

In a personal post I wrote the other day, I described this as using all my energy to prolong my life, just so I could continue on with the task of prolonging my life. Where is the actual living? I wouldn’t have time or energy to do both, and I cannot, cannot, cannot put my life on hold anymore.

Some people would be driven mad if they didn’t go into treatment mode. I was like that for, what, almost thirteen years? Now, I would be driven mad if I did. Enough is enough. A season for all things, and whatnot. (All seasons are beautiful and necessary…)


These are the most personal words I’ve ever written, the most personal things I’ve ever shared. And I share them in hopes that someone out there will benefit from it. I don’t personally know of anyone else choosing this path in response to my particular “set” of diseases, so if you happen to know of someone, please send them in my direction.

As I often do, I leave you with a quote from Ralph Marston:

“You have nothing to prove and everything to be. What matters is the truth of who you are, not the way you appear to others.

Give the honest truth of yourself, and you have no reason to strive or worry about making a good impression. Give the authentic truth of yourself, for it is the most loving, compassionate, uplifting and enabling thing you can do.

You do not have to strive against your own thoughts of limitation. Allow your unique beauty to continually unfold, and experience the power of how good and right it feels.

You do not have to be held captive by the thoughts or actions of others, or even by your perceptions of those thoughts and actions. You can allow yourself to be, positive and whole and fulfilled, now and always.

You have everything to be. Feel the miracle of your existence, and fill the world with joy.”

a rainbow at night

 

The Choice of Someone With Progressive Disease to Stop Treatment, Part 1 of 2: Wrestling With the Universe

the-choice-of-someone-with-progressive-disease-to-stop-treatment
[ estimated reading time: 4 mins 20 secs ]
I did not arrive at my decision lightly. I experienced… Ah, I experienced a lot. The Caring Connections organization put together a great example list of the emotions involved in living with serious illness:

Emotional changes that you may experience include:

  • Fear – about what will happen as your illness progresses, or about the future for your loved ones
  • Anger – about past treatment choices, about the change in diagnosis
  • Grief – about the losses that you have had and those to come
  • Anxiety – about making new decisions and facing new realities
  • Disbelief – about the changes that will be taking place
  • Relief – about ending difficult treatments and setting new goals for care”

They also have a list of various myths, truths, and things to remember, such as:

Myth: Accepting that this illness cannot be cured means that “nothing more can be done.”
Truth: When the focus shifts from cure to care, a great deal can be done to relieve physical pain and emotional suffering, and to ensure a good quality of life.
Remember: Have conversations with your loved ones about what you do and do not want. Designate a healthcare agent to speak for you in the event that you can no longer speak for yourself.”

I can talk about this more clearly and rationally now, after several weeks of living with my decision, but like I wrote earlier: It was anything but easy. (This entire post is quite embarrassing to write, actually.) I experienced extreme guilt for not wanting to get treatment.

Since I don’t believe in coincidence, it was difficult to figure out whether I’d learnt of the MTHFR gene mutation to get it treated so I could get back on Lyme treatment (but I thought of this more out of habit than any true desire or intuition), or to just be more aware of how I could help my body… I was living too much in the trying to find the Lesson and not enough in the living the Experience (which ultimately gives you the lesson). I heard something like that during Oprah’s Super Soul Sunday several weeks ago.

I knew I’d lose my mind if I tried to do “the Lyme fight” again.

I’m 99% sure I’d lose my mind if I fought my own body at all, at this point, to be honest.

So I didn’t know what I was “supposed” to do. I knew what I wanted, but I felt guilty for wanting it. Probably as a remnant from my more religious upbringing, I actually felt like God would be angry with me for my decision. I automatically felt like choosing to live without fighting disease, would be choosing to die, so how could The Universe possibly support me in that? I felt like I couldn’t trust myself anymore.

But that same day, the guest on Super Soul Sunday started talking about God’s Love, and it really brought me back to my core beliefs… The Universe bringing me back to Itself, surely.

It reminded me that I am not being judged. That God–whether a He, She, It, The Universe, whatever that Source may be–does NOT hold anger or negativity toward me for my decisions, that those feelings come from my interpretation and not reality. It reminded me that I could NEVER be a disappointment, and the most important of all: That there is nothing but Love and Acceptance for me; Love and Acceptance for What Is; Love and Acceptance for what I decide…

As a recovering codependent, I had to realize The God Force I believe in is not like so many humans I have known, who bestow their version of love based upon how much what I do agrees with their opinion.

Probably the craziest part of it, was that in my darkest, anxiety-ridden moment, I felt like if I made the “wrong” decision then all my suffering would be my fault and I would deserve to be punished and abandoned, for not being in alignment with “God’s will.”

Oh, thank you, gene abnormality, for helping me bring all of this to the surface and release it. Those old brainwashed ways of thinking are NOT who I am!

I was so focused on What if I make the wrong decision? that I wasn’t able to stop panicking long enough to figure out from where my suffering was arising. And I was so absorbed in assuming my thoughts were a form of escapism–I must be running from my fear of going to a new doctor, I must be terrified of the new treatments not working, I must be running from the reality of another health problem…right?–that I completely neglected the idea that turned out to be the real problem:

I was actually running from the fear of not treating, and what would happen when I did that.

Treating felt too wrong to possibly be right. But choosing to forego it is something I’ve never done. I can see now, in hindsight, this discovery WAS the lesson in itself. It wasn’t a lesson in what to do. It was a lesson in how to Not do, something I’ve never known how to.. well, do.

I had no idea how much courage it takes to let go. To be continued…

a rainbow at night

 

MTHFR Deficiency Cannot Be Cured, But Treating To Cure is All I’ve Ever Done

Earlier this month I found out I had another new diagnosis, another piece to my chronic illness puzzle.

I found a doctor with experience in the area, and spent three weeks gathering the past 18 months of my medical records and filling out their extensive forms.

And this afternoon, I shredded all of it.

I found out I do, indeed, have the MTHFR gene mutation genetic polymorphism. Two of them, two copies of the C677T mutation, or MTHFR 677 TT, put another way (homozygous). This is not the worst case scenario, which would be one C677T and one A1298C polymorphism. What it does mean–as far as I can tell–is that while people with only one copy of the C677T polymorphism might have mild problems or generally do just fine, people with two copies are at a higher risk for the associated diseases. And it’s a reason why I cannot detox properly. Maybe the reason.

At the biological level, it means my body has trouble converting folic acid–the synthetic, unnatural, manmade form of Folate/B9–into a form that I can use. And because properly converting folic acid is what allows you to properly convert B12 to use, I have trouble there, too. (Or at least, I’m supposed to…?) So because these polymorphisms cause my body to be less efficient, I don’t make enough methylfolate. But you need methylfolate to use folic acid, and you also need methylfolate to use B12 (that is, to convert the common manmade-B12, cyanocobalamin, into the body’s natural, useable-B12, methylcobalamin).

Depending upon how much you randomly know, you may have noticed that says I cannot convert the forms of Folate and B12 that are added to everything, including 99% of vitamin supplements: Folic acid and Cyanocobalamin. They’re in everything because people are supposed to be able to convert them and use them. But I can’t do that very well, so if I consume things that have these, such as in vitamins or enriched foods, I am going to have a build-up of these unusable-to-me forms of vitamins, while never getting adequate amounts of the ones I can use.

This is why taking a multivitamin makes me sick. Even when I was taking my B-complex, I always had to chop them into pieces and only take them a few times per week to avoid sickness. Now, FINALLY, I know why this happens!!

“Folic Acid is Not Methylfolate

“Synthetic folic acid does not exist in the human body. It is found in vitamins, and thanks to the FDA’s wisdom, in enriched flour-based foods (yet another reason to shun flour!).  Multiple enzymatic steps are necessary to convert folic acid into its active form beginning with dihydrofolate reductase in the gut.  Individuals with gene variants, but specifically homozygous C677 should avoid folic acid because of the concern for limited breakdown and subsequent accumulation of this man-made agent. One study has implicated folic acid in suppression of important immune factors called natural killer cells.

Source: Kelly Brogan, MD

All of this is supposed to mean I should have elevated levels of some things and low levels of various other things floating around because I can’t convert them properly… And these excess levels can cause all sorts of problems. But, according to my recent bloodwork–particularly the homocysteine–everything is within normal limits. It’s kind of astonishing, really.

To say I’m appreciative of my body finding ways around this, and making me crave food that would give me what I need, is an understatement. Go body, go! I will help you.


You know what medication makes this worse? Bactrim. This probably helps explain why my liver was fine until I needed Bactrim to finish killing off the bartonella infection. Should I need it again in the future, I will know to take milk thistle or something similar, to offset the effects, BEFORE my body gets too stressed…

And that’s pretty much how I’m going to approach this entire thing. I’m going to learn about it slowly and do what I can do offset the effects–symptom management, palliative care–and let my body continue doing what it can for as long as it can. I may do further research into mild supplementation, but mainly, my outlook is that this is another quirk I get the OPPORTUNITY to manage. Of course I reserve the right to change my mind at any time, but:

I am not going to go into “treatment mode.”

And it took several weeks of lamentation for me to really understand I had that choice, and that it wouldn’t be the same as suicide. As one person put it,

“The media constantly bangs on about how to live. . . They tell you how to preserve your body surgically and chemically so you look younger, slimmer, healthier. Why? Nature is perfect in herself. Every season is beautiful.

To be suicidal is to want to die and take actions to facilitate it. But I want to live. It just so happens that humans are subject to disease and death, and if I continue on the path which I have for the past almost-thirteen years, I will not be able to enjoy my life, the only one I have.

I am going through a whirlwind of emotions with this, and if you think you’re able, you can take the ride with me.

I don’t think I’ve ever been so scared, or happy, in my entire life. To be continued

a rainbow at night


PostScript: I’ve been doing a lot of photography lately in honour of Jeremiah Katches‘ passing, so I’ll be posting some of my pictures at the bottom of my posts. This may be a temporary thing or ongoing (much like life, really), but here you go:

“All is well, and has been, and will be.”

[ estimated reading time: 6 minutes 26 seconds ]
This year I learned that looking forward is still looking away from the present.

Even looking forward positively, is still not living in the moment, not looking at Now. You can’t get caught up in all the things you’re looking forward to having or being, because you’ll miss the opportunities of the only life you have: The one you’re already living. It’s good to have goals! But, for some things, it is not the end result that is most important.

I’ve been noticing that now it no longer serves me to see this “attack on Lyme” as a battle to be won, where anything other than eliminating the bugs is a failure. That cannot be my focus anymore. It’s not my focus in dealing with M.E., and it cannot be my focus for dealing with neuroborreliosis, either.

I used to be okay with waking up every morning knowing I had a war to fight. Because for a while, it really was a war–beat the bartonella, do whatever I had to in order to get it under control, or it would very quickly be the end of me. And like a patient recovering from chemo and radiation, my body paid the price of all the medications needed to do that. But at least I’m still alive. I did it! I just can’t “win the war” against the Lyme that way…

I’ve had to stare reality in the face for the past several months and recognize that I may not “win the war” at all, at least not in normal standards. I have to redefine what “winning” means to me.

 

This is not a disease I can conquer forever with a few rounds of treatment. With my immunodeficiencies, very neurologically-oriented six-years untreated strain of infection, ten-year history of M.E., and twelve-year history of just trying to stay stable every single day, my body has been through a lot. So, to be perfectly honest, I may never get rid of Lyme disease. But that doesn’t mean I’m going to just let it take over.

I just can’t look at it like my goal is to “win,” where winning means nothing short of slowly eradicating the infection, because truly, why would I do that to myself? Why would I invest all my energy and focus into something that, for all intents and purposes, probably isn’t even possible anymore? Why would I do that, when there is another way, a way that brings me peace and also allows me to treat my disease?

Because that’s what I have left–I have a treatment, not a cure.

I used to think it could be a cure, because for most everyone, it is. Even if they find it late in the game, many will just have a longer battle to fight, but they can “win.” They can get IV antibiotics if their case is in their CNS, or they can at least take loads of oral antibiotics to make sure it dies and stays dead. That is possible, even for many with coinfections. But me?

Even if I could get IV antibiotics, they would probably kill me in the process; even oral antibiotics are almost impossible. (Almost.)

Maybe if Life had shown me the infection earlier, we could have cured it, even with all my additional factors. But that didn’t happen. I’m only thankful It brought information my way when It did. I am glad bartonella and mycoplasma happened, to alert me that I had something else going on that was about to irreversibly damage my body. I’m glad I am someone who pays attentions to those things, or I wouldn’t be here right now. But that’s the thing: I am still here, and I still have a life to live…even if it’s not the one I imagined!

 

I naively thought that when you go through something like this once (getting diagnosed with M.E.), twice (getting diagnosed with Lyme disease), it might be over, the whole “massive illnesses that alter the course of the rest of your life” thing…

But that wasn’t true, either. It took me almost a year to come to terms with the Lyme disease diagnosis, because inside I knew if someone like me had it, it’d probably be with me for life. I didn’t want to accept that. Then once I started getting better for a while I thought, okay, it’s not too late for me, there is still hope! And back then there was hope because it’d only gone untreated three years! And even now, I haven’t given up… But like I said, looking forward is still not looking at what you already have.

Someone shared with me a Žižek quote that pretty much sums up everything:

“Our desires are artificial, we have to be taught to desire.”

I was taught to desire an eradication and to accept nothing less. I was taught that if I did certain things, then things would work out, go the way I wanted. I fixed my focus on “I can get better again if…” and put in my head a bunch of things that could happen, should happen, that would allow me to have the life I wanted. And I went after them, like anyone would…

  • “If I eradicate the bartonella…” I did, and my reward is Life.
  • “Then I can get the Lyme disease under control…” But I cannot handle the treatments anymore.
  • “Because a lot of people with M.E. experience another remission after about ten years.” But I relapsed, instead. Twice.

 

Things didn’t go how I planned, how my doctor planned, how my friends and family planned. But my life is not over. I just have to come to terms with my new reality–a life with Myalgic encephalomyelitis, and a life with chronic relapse-remitting Lyme disease. I may eventually get a diagnosis of multiple sclerosis at this rate, but at the very least, that disease does not face the same mockery by the medical establishments (or insurance companies).

I have fought well and hard for the health I do have, and I will continue to fight to keep it, but I will not, cannot, see this as a “daily battle to win the war,” anymore. It is not. Now, it is better for me to wake up and think about my other goals, and have “treating Lyme” as just another part of my daily regimen, a part of my life that will never change just like having M.E. will never change. I cannot give away all of my spoons to treating a disease that will still be around after the fact.

“You are here, in this moment, able to do so much that’s worthwhile and fulfilling.

“Your life has real purpose, and when you let go of the superficial concerns, you can feel and know and follow that purpose. Life is beautiful, and by taking the time to look closely, you can see the beauty everywhere.

“All is well, and has been, and will be. The genuine goodness within you refuses to be compromised by any of the world’s ups and downs.”

“Go ahead, step forward, and live with total, solid confidence. Let every thought and action be filled with positive purpose and the knowledge that ultimately, you cannot fail.” (Ralph Marston)

My disclaimer: If you’re a fellow patient of Lyme, I beg of you not to take my own need for expression and use it to convince yourself that there’s no hope for you. You and your doctor can only figure out what’s best for you after a careful analysis of your individual situation. I’m not even saying there isn’t hope for me, but I’m fully aware of how some people think and thus how everything here might come across… It actually stops me from writing sometimes, but I don’t want that anymore.

Expect to see more of my uncensored thoughts in 2013, and stay strong, no matter what decisions you get to make. :)

a rainbow at night

Pill Fatigue or Pill Failure?

It feels like I’m talking about someone else’s life, sometimes, when I go to write about this.

So, in my last post, I said I’d give myself another two weeks off treatment and then re-evaluate my state of health to see whether or not I should restart treatment for Lyme disease. Something happened to help me make that decision.

I got an ear infection. Just a minor bacterial one which I get about once a year if I’m not already on antibiotics at the time. (Well, at least compared to a VIRAL ear infection, they’re minor.) I’m a miniature pharmacy so I already had the Z-pack needed to treat it.

I took one pill (and you’re supposed to take two at first, but I didn’t think that’d be smart for me…I was right) and spent that night feeling unimaginably ill while trying not to have a mental breakdown.

Fellow Lymies already know this, but: Zithro is the cousin of the medication I’ve been on (Biaxin) to treat Lyme disease, and also a potent treatment option in itself, so taking it affected a lot more than just trying to help my ear. There was fever, chills, constant shaking, dizziness, numbness, nausea, and a host of other things, like not being able to remember my best friend’s name (?!?!). But the real “kicker” was that I felt that way from just one pill

After being off meds for a month and a half, I can’t even handle one pill. :|

I can only handle half-a-pill, which is less than a child’s dose, and I can only hope it will be enough to cure my ear infection… But it’s definitely not enough to treat my disease. If anything, these tiny half-doses may keep things from progressing too quickly, but will also make me a target for drug-resistant bacteria, and then talk about being in a mess…!

This does take away the choice (mostly) of whether to begin treatment again or not, because it’s obvious I physically cannot do it, and mentally, I am still so, so tired.

Toward the middle of November, I thought I was doing better. I left the house three times in a week, and (not the same days, but) I had three consecutive days with no pain. So I thought I was getting over the relapse, until this happened. I was just a little crushed… But it is what it is, right?

I’m not sure what’s going to happen from here. My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. (And the Lyme disease is stage 3, meaning it’s.. everywhere. And it does not wait for you to be able to handle antibiotics.) But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.

If not, well… C’est la vie, que sera sera, and all that jazz.

 

I stopped doing the ability scale checkpoints because they are a reminder of how I haven’t made much progress since finishing bartonella treatment. Now, I don’t want to make that sound mediocre… If that disease was still present, I wouldn’t even have the luxury of wondering whether or not handling treatment was an option; I’d just be dying very quickly again!

But the truth is still that I kept waiting for a stable period to make an assessment, and that has yet to happen. I repeatedly had to pause treatment, take such-and-such different medication, take this-and-that medication to balance out the first one, then relapse, recovery, relapse again, and whatever progress I did make, I just kept going downhill again.

I made my last checkpoint at the beginning of this year and I can honestly say I am still at that place, in general, with the obvious adjustment that my symptoms are more severe for the time being due to relapse. But at least I am not any worse than that. I like being able to breathe and walk on most my days. And I do think I am a bit recovered from this relapse that began at the beginning of October.

I can handle longer periods of light, I can be out of bed more, and I have longer stretches with less pain. The translation of that is: I can usually use technology for several hours a day instead of bursts of twenty-minutes until I couldn’t bear it anymore; I make it out of my room several times a day instead of barely once, and sometimes I can leave the house; and my “usual” needed dose of pain medication is once a day, instead of always twice a day…and I have random days where I don’t need any at all. So,

  1. without intervention of medicines like caffeine (which is the only thing that enables me to do things like take a bath, or have a stable blood pressure), or pain medications (which are the only reason I can be active at all); and
  2. with 100% being completely recovered,

I am currently at 15% physical ability and 20% cognitive ability. As we all know, there are better days and worse days, but in general…

And with 100% meaning completely symptom-free, I am at 10% symptom severity. Though I think the chart should be in reverse for that section, because initially “10% symptom severity” sounds as if I only have symptoms 10% of the time, and it’s the exact opposite I contacted Jodi about this and she switched the chart around, so with the new version, I’m at 8/10 severity level:

“Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.”

Thankfully I do have medications to help me get through this difficult time, and all the support in the world from my friends, fellow spoonies, and doctors, about whatever decision I have to make. (My family unfortunately has no idea of the magnitude of this… Right now, I’m not sure I’d want them to know, until I can give them an idea of what we’re looking at…) And I have an appointment with a pain management specialist next week, and I see my Lyme disease specialist on the twelfth. So this is where I am at!

a rainbow at night

(P.S. – Today is my 2-year WordPress Anniversary!! I never imagined so many people would be helped by the words I share. Thank you, all. Stay strong with me!!)

For right now, this needs to stop.

As far as my relapse conundrum, I could not continue treatment, after all. I just.. stopped. I am still so emotionally drained, and my body is at wits’ end. I’ve been off antibiotics for a month, now, and I’m flaring at the moment because of the usual beginning-of-the-month bug-flare that happens… Only this time I am not protected, so it’s scary to think of what they’re doing in there! How can one feel this close to having the flu and not actually have influenza?

On Samhain I ultimately decided to take another two weeks off and just restore my body as much as I can, with only the necessary things and as few medications as possible. I don’t think I have any yeast problems from the long-term antibiotics, but I’m going to take a few doses of candidiasis treatment, just in case. And then I’ll talk to my LLMD and see where we can go from here.

I can’t thank you all enough for the responses to my last post. At any given moment, I am ready to reach out for help, or curl into a ball and never speak again. It’s a constant back and forth. I want to say, “the disease is what makes me want to retreat,” but it’s not even that. It’s my response to it. It’s knowing that I do have some control here, I do have a choice, and I’m terrified of making the wrong decision. Continue this grueling treatment regimen and make myself worse, an inevitable decline, or forego treatment completely and still begin an inevitable decline. But I’ll tell you what.

My intuition says to stop.

And I always, always listen to it. It says I need this break. It says I could use it to heal my body as much as I can, and in two weeks I may know clearly again what next step to take. I can’t believe in God as much as I do, and ask Him to guide me, and then not follow what I feel is the right course of action, even though I can’t explain it.

That became even more apparent today when I really wanted to take my antibiotics again, because the thought that these infections are inside me running amuck and I have nothing to stop them, is very frightening. It was then that I noticed how strong my conviction was to not resume my treatment…

Anyone think I’m crazy, yet?

I can’t help but notice that the idea of treatment helping me, which has always been my motivator in the past, has not even crossed my mind. It’s as if somewhere inside I know that to continue with it at this point in time would do me harm. Logically speaking, I think that not treating is also pretty bad, but somehow, not as bad as taking these medications; at least not right now.

So that’s where I’m at.


I also had a visit with my new neurologist, and it wasn’t as productive as I thought it’d be. Part of that is my body’s fault because I only got to ask him half of what I wanted–I was so bad-off that morning I almost passed out in their waiting room.

In response to my relapse he said, “There will be good weeks and bad weeks, good months and bad months.” And apparently when you tell someone you have myalgic encephalomyelitis they don’t think twice about you having severe daily headaches and eye pain (i.e., “I guess you do have headaches”). But he’s a good doctor who at least didn’t outright call me a hypochondriac. I’ve noticed with having this lesion on my brain, people tend not to think you’re “just exaggerating” quite as much. He said it was post-infectious demyelination, but it wasn’t changing in size so he didn’t feel I needed a repeat MRI for right now. My various damaged nerves are healing up, so that’s a good thing! So much so, that he didn’t  think I ever had facial palsy…! Luckily that’s in my notes from my last neurologist. :\

He also thinks all my movement disorder problems are Tourette’s… Which is wildly inaccurate, but because he thinks Tourette’s Syndrome is just a “group” of movement disorders rather than its own thing, and that it should be diagnosed only after the other movement disorders have been ruled out, it would make sense for him to say that. I can always see that movement disorder specialist should things progress even further, so. (I know it’s not Tourette’s because, while my TS does act up when I get new infections, it acts up completely differently than the problems I’m currently having.)

He said do NOT take any triptans for my migraines (the main reason I went to see him, actually), and gave me Cambia powder to try for my next attack. Which my insurance won’t cover, of course, so I’ll rely on samples, like the other three medications I can’t afford. He diagnosed me with complicated migraine and said I really should be on a preventative medication with this type of diagnosis, but I mentioned that not ALL my migraines do the whole “Hey I Look Like I’m Having A Stroke” thing. I’ve had them fifteen years (or at least that’s when I was finally diagnosed), so it makes sense they’d eventually progress, but I only get “those” maybe once a month or every two months…which is probably not very good, but good lord I just can’t handle another medication right now, especially when my options for preventative medications are very limited! I think he actually ran out of ideas for me since Topamax is practically my only choice and it lowers my intracranial pressure. :\ But at least Migraine is a well-studied disease and, should I live long enough, they will probably come out with something new, soon.


The best news I have is: (1) I got to visit a friend (actually, I returned to the scene of the crime of where I caught Lyme disease), and I recovered pretty easily from it with all the careful planning and tailored resting schedules. And (2) I invested in a tilting overbed table. I don’t think I have words to describe how useful it is. How have I never thought of this before? Person who is in bed most of the time, desks that go over the bed… Regardless, this thing is amazing. What I really love is the little mini-desk on the side that always stays flat so you can put stuff on it!

a rainbow at night

Relapse Journey: Is Choosing Treatment Still Choosing Life?

Here, let me type this so you all won’t think I live in a happy-land bubble. (That’s not really why I’m typing this, but it’ll probably confirm it unintentionally.)

This relapse has sent me on quite a ride, physically and emotionally. I did need to take the full two weeks off of treatment, and I’ve only been back on treatment one week before hitting the point of “why am I doing this,” because I’m still relapsed, feel like hell, and I can’t handle this. I’m generally better than I was during the initial crash, but I haven’t bounced back from that point, yet. And the pain…

I have been on twice my usual pain medications, every day, for almost the entire past three weeks. I think there was maybe one day I was okay without anything (and I really wish I knew how it happened!). This has mostly resulted in me subjecting myself to psychological torment over needing them. I used to be able to take breaks from ibuprofen, for the well-being of my stomach; now I cannot. I used to be able to take Lortab (vicodin, as most people know it) once or twice a week to get through the worst of things; now the pain is so bad I cannot function without taking it daily.

Even typing that–that I can’t function without painkillers right now–makes me feel guilty!

In my head, all I hear are family members who took them, who REALLY DIDN’T need them and therefore think no one else actually does, either; other spoonies who have said incomprehensible things like “this suffering is unbearable but I ‘don’t believe in’ taking pain medication”; and society saying that anyone who takes Vicodin is probably one step away from being House, MD during one of the really bad rehab episodes. So yes, cue the shame over needing something to make it through the day, when I previously could just tough it out.

I’ve done a lot of thinking about this, dissecting it from various angles… It’s like I feel I am somehow responsible for needing it, as if I did something to make this happen instead of realizing my body is severely ill. Well…

My favourite quote is the African proverb,

“When there is no enemy within, the enemies outside cannot hurt you.”

Which translates to: Someone’s ill-conceived judgement of you is not going to hurt you unless you actually believe what they say to be true. I even wrote it on my mirror in dry erase marker a few months ago, to remind me of it. This helped me realize that it wasn’t what I thought everyone else was thinking that bothered me–it was actually what I was thinking about myself. I was the one condemning me, not anyone else.

The people who love me were actually very glad I had adequate pain relief! It was (is) the only way they’ve gotten to see or hear from me at all the past three weeks!

It all boils down to a loss of control, I think.

  • Maybe I’m just not ready to accept that I’m still under the effects of this relapse and haven’t bounced back from it yet.

  • Maybe I’m scared my disease is worsening or my Lyme treatment isn’t working or has done all that it can do.

  • Maybe I’m uneasy because I’ve never been dependent on a controlled substance before.

  • Maybe I’m not ready to accept that I’m a chronic pain patient again.

  • Maybe it reminds me that things WILL eventually get worse.

  • Maybe I’m scared that there is no turning back from this point (even though there probably is).

These are the ways relapsing makes you feel. I’m frustrated over my Lyme treatment, and all these medicines, and I’m just.. so tired of all this. I’m so tired of this fight to prolong my life.

Sometimes I just want to stop taking everything and see how far I make it. But I also feel that’d be almost the same as suicide.

I just think, Well, if I’m going to keep going downhill, at least let me not fight/make it happen even quicker; it’d be better to enjoy what I still have than waste what’s left on a battle I can’t win. My doctor once told me that, even. If the treatment is as bad as the disease itself, to weigh my options. Treatment for chronic Lyme disease is like chemotherapy for cancer; don’t let anyone tell you differently. And even if you get relatively symptom-free, it can always come back. My old bartonella infection could always come back, even.

So for now, I’m returning to once-a-day Biaxin for the Lyme disease and Mycoplasma treatment. It’s either I go back to that, or I stop treatment completely. I’m emotionally worn out from getting better and then relapsing, with each event being worse than the one before it. (Quite a predicament to be in when my subset of myalgic encephalomyelitis is relapse-remitting–that’s pretty much all that my future holds!)


This might all seem like a 180 from my last post, but it’s not. Maybe I had to express how grateful I am to be alive, so I wouldn’t think this (what I’m feeling) was because I wasn’t… Because I am grateful, and all of this isn’t because I’m not.

My being thankful to be alive and also tired of fighting are not mutually exclusive.

I am so happy to still be here, to have all these things that help me, and people who love me… And sometimes, I just want that to be enough. Sometimes, I just want to embrace my accommodations, enjoy what I have, what life I have left, and live out the rest of my days in as much peace as possible, without the fighting to stay alive part every day, without the medications that are keeping one disease from progressing but which may be setting me up for worser things in the future.

The choice is ultimately mine, I know.

I don’t often say this, and it might be a bit crude, but I should get an award for not offing myself yet. I have friends with this disease who have tried, and friends who have succeeded, and I don’t blame them at all. No, I don’t blame them at all, in the face of a disease that takes you oh-so-slowly. To hold on when there is little hope of a cure, and you know what you’ll face later on: that is a true survivor, no matter what the disease does to you.

Well, actually, I did get an award; a blog award, and I’ll talk about that… In my next post. Along with some facts about the me, the person behind the blog.


For others going through a relapse right now, I offer you this:

What is a relapse?
It is an unexpected deterioration in the condition of a sick person after partial recovery.

Conclusion: A little Allegory
Imagine, if you can, a tranquil English breakfast table. The kettle steams, the electric toaster is in action, but someone forgets to adjust the thermostat. Suddenly the smoke alarm shrills from above and is wrenched from its socket before upsetting the neighbours.

Despite our wonderful self-regulating kitchen gadgetry, all is in chaos! In future, pay careful attention to your body’s thermostat, your daily variation in energy and activity and remain grateful for the commotion set up by your immunological stress alarm if it prevents another set-back. Good luck!

http://www.tymestrust.org/pdfs/nosmoke.pdf

a rainbow at night

Attention: I’m not suicidal.

Unpopular Opinion? The Taboo of Gratitude Within Chronic Illness Communities

[ estimated reading time: 5 minutes 23 seconds ]
I don’t know why this is an unpopular opinion, but it is:

I feel blessed to live in a country where I can obtain so many accomodations to offset the effects of my disease.

If I were in many other places, or a third world country, I would have died within a few months of getting sick; there would have been no chance for me. Obviously that wasn’t the journey I was meant to take, it would not have given me the lessons I was meant to learn, so here I am.

Things are not perfect, but it is a wonderful thing that we do have support systems in place for people in my situation, regardless of how many politicians call us malingerers or how many bitter people try to loop everyone on social security/welfare into one big “something for nothing” group.

All these things–social security, medications, things like laptops that help us connect to others in a housebound state, and things like wheelchairs and adjustable beds and home IV therapy–give us a chance at life that many before us never had. (Hell, when I was growing up we had to endure illness without the invention of the internet! Can you imagine? Haha.)

This thinking I’m doing comes from a frame of mind that doesn’t expect other people to owe us anything. It comes from pondering Buddhist philosophies which seek to be realistic, accept What Is, and not live life in a constant state of wanting. Because that’s certainly not the mindframe of most here in the West. It comes from thinking that we are worthy of love and joy and peace simply because we exist, but hey, suffering also exists: as a fact of life, not a punishment.

Yes I am upset at the discrimination of the now-infamous “47%”; yes I think it’s our responsibility as human beings to try and care for one another and get help to those who need it; yes I think it’s our responsibility to speak out against injustice, when we have so many means to help people, and those in places of power are not cooperating. I’m not suggesting we simply turn up our noses, say “it is what it is” and not try to change it.

But while you’re waiting for things to change, you have to accept the way things currently are; you have to become aware of what you already have, and realize how fortunate you are to even have that.

It is amazing that you have methods to help manage your illness: Medicine to help ease your pain; soft beds to lie in; the right food to eat; indoor temperature control, which is an often overlooked accomodation. Many in developed countries, I think, forget that the majority of the world does not have these things to the exceeding surplus that we do. If you have something that the majority of the world does not, you are blessed.

I cannot forget that if I were somewhere else without these accommodations, I would perish. My daily life makes that uncomfortably apparent.

Of course it is disappointing when there exists external items to help you even further, that were created for the purpose of helping–like money, certain foods, medical treatments–and for whatever reason, you don’t have access to them. All the time, I see people with myalgic encephalomyelitis with no hope of getting better because research for our disease is not being funded (though the FDA did recently vow to find medications to treat both CFS and M.E.–not “ME/CFS,” but both separate, distinct conditions). All the time I see people with chronic Lyme disease and its related co-infections trying to raise their own funds for their treatment and cure, because our government does not currently believe we even exist and getting the proper medications can be impossible. And I see people who are disabled and who should be able to receive benefits to live on so that they won’t become homeless, but who are not getting them due to flaws in the system. Things are not perfect.

But what about what you do have? What about the things that help you face the day, without which you’d have been gone long ago? Does it truly not matter that those things have helped you stay alive up until this point?

Sometimes when I am grieving the things I’m “lacking” but “should” have, at some point I try to practice gratitude for those that do have them. I.e. I try to be happy for those whose test results and various means of funding enabled them to get the PICC lines and ports and hyperbaric oxygen therapy and infusions. And somewhere out there is a person who cannot get any antibiotics, who wishes they had the medication I do; a person who wishes they had a doctor who believed them, like I have; who wishes they had adequate pain management; had funding to get daily living accommodations; friends who were there for them; family who supported them…

I’m still going to be extremely disgruntled when my head feels like it’d be better off removed than attached to me.

I’m still going to feel like crying when I hear another child with M.E. has been forced into a mental asylum because their doctors do not understand the harm they’re inflicting.

I’m still going to be bothered by the fact that I will never be able to get IV antibiotics with my test results, just because my immune system functions too poorly to make those tests show enough positive antibodies.

Again, I am not saying we are to be emotionless zombies without a reaction to anything. I was honestly scared to post this. I feel like, if absorbed in the wrong way, it will seem like I’m saying, “You’re lucky to get what you get, so shut up,” and that is not my intention. I also don’t want to type this and make it seem like I live in a fantasy world where nothing bothers me. I’m trying my best to improve my state of being through whatever means available, just like the next person, even if often my body cannot cooperate yet.

I just find it better to guide our thoughts into gratitude instead of dedicating our limited, precious time and precious energy to all the things we don’t have; self-compassion is better than self-pity.

I find it better to realize that having anything to help us through disease is a miracle, because we are not, in fact, entitled to it, but blessed that we got sick in a place where anything at all could be done for us.

I just find it better to live in gratitude.

a rainbow at night

(Postscript: I know I’m not entirely responsible for how people perceive my writing, but I do hope I’ve framed this enough in the way of, “You are lucky to get what you get, and I think it’s best to focus on that while you try to get whatever else you need.”)

I am not my body.

digital painting by a rainbow at night, based off the original photography of Heather Bybee

And yet, I am.

I am not my body because I am not the sickness, the weakness, the pain, or systemic dysfunction that prevents me from doing what I attempt on any given day. I am not my body’s shortcomings. I am not what my disease does, whether physical or mental, and I will not feel guilty because my body is sick. It is not my fault that it cannot function like that of the next able-bodied individual.

But I am my body because this is the vessel through which Life is expressing itself, and we have one very important thing in common:

No matter what is going on, it always functions to the best of its ability. Each and every moment it aims to support and accommodate me in all that I–and disease–attempt to do. You’re never going to wake up one morning and have it go, “No, don’t feel like giving my all today, sorry.” It may feel like it sometimes, but it never slacks off. It’s always calculating priorities and options and will always do everything within its power to run as smoothly as is possible for the situation.

“Your body didn’t betray you. It just compensated and compensated until it couldn’t anymore.” *

Have truer words been spoken?

This morning I woke up with a rash on my neck; it’s always been a telltale sign that my immune system is strained. My first instinct was to berate my immune system for not working properly–don’t I go through enough?–but wait a minute…

Did it purposely fail me? Did it not try hard enough to function properly? Did it just get lazy and decide to rash me up? No, not at all. It’s actually trying its best to support me.

Sometimes what our body is able to do isn’t enough to give us the outcome we desire. Sometimes it might even attack itself out of confusion, causing us more suffering. But our body–like you and I–will always do what’s perceived to be right, will constantly accommodate changing circumstances, and always aims to do the very best.

Repeat after me:

My body is doing the best it can to support me.
My body is doing what it thinks is right.
My body is not my enemy.

:)

a rainbow at night

* This profound statement was shared by the doctor of one of our fellow Lymies.